Oct 03

Guest Post: Mom’s Income / The Real Cost of Childhood Special Needs

Laura Weeds Wright’s blog is The ODD Mom. Here’s what she says about herself: “I deal with more parenting challenges in a week than most parents probably deal with in a year. I’m an ODD mother — the mother of a child with Oppositional Defiant Disorder. I’d love to say this doesn’t define me, but something that consumes your every waking hour can’t help but define you. So rather than hanging my head in shame, I’ve decided to wear the label like a badge of honour. Come with me…it’s an ODD life I live.” This blog post was first posted on her blog in April, 2012.

As I sit here in the middle of the afternoon, chaos reigns around me. On the table beside me sits a stack of bills that I’m trying to juggle payment on — I have to decide which ones need to be paid now and which ones can wait until next payday. In the living room Stitch is playing, happily throwing blocks around and laughing madly as they bounce off the furniture. Down the hall Bear, who should actually be at school right now, is playing his Leapster, the fact that it’s an “educational” game allowing me to fool myself into believing it can be classed as “work.”

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Apr 03

Understanding Bloomers

A recent article by Linda Carroll, Outgrowing Autism? Study Looks at Why Some Kids “Bloom” highlights a new Pediatrics study of 6,795 California children showing that “about 10 percent of children who are severely affected by autism at age three seem to have ‘bloomed’ by age eight, leaving behind many of the condition’s crippling deficits.”

This article got my attention because my own twins, although never diagnosed with autism spectrum disorder, showed symptoms associated with Asperger’s by age 18 months but now, having just celebrated their eighth birthday, those symptoms seem like a distant bad dream we’d all like to forget.

Could I be the proud mother of a couple of bloomers?

Carroll’s article goes on to explain that when researchers looked at the characteristics of the bloomer’s families they found a few commonalities: bloomers tended not to have intellectual disabilities and their parents had more education and financial means to get early, intensive therapy. Mothers (fathers weren’t studied) had at least a high school education and came from a “higher socio-economic class.”

The anthology Easy to Love But Hard to Raise is full of parent’s stories, including my own, that share our ambitious, creative, and persistent search for solutions to our children’s behaviors and disorders, alongside the myriad of feelings that came with their diagnoses.

Parents who have been through it might question the use of the term “grown out of it” because it implies that the child might have shed their diagnosis simply with the passage of time. This article from February that studied 1,366 parents of autistic children suggests that 33 percent of children may downgrade their diagnosis to Asperger’s or shed their autism diagnosis altogether by age seven, but not without intensive parental support. Other previous studies have suggested that number lies between 3 and 25 percent. Parents of ETL kids understand that our children have improved because of our early, tenacious efforts and the help of teachers and professionals.

Another article published in Pediatrics in January supports the finding that children that “grow out” of autism tend not to have other physical and psychological diagnoses. Children with a hearing impairment were the most likely to shed the autism diagnosis because once their issues were addressed, the other autism-like symptoms resolved. This fact sheds light on the potential for misdiagnosis, which certainly exists when trying to diagnose children of preschool age and younger.

Can the study of autistic bloomers be extrapolated to children with other disorders? The answer seems to be the dreaded “it depends.” Psychologist Dr. Ari Tuckman’s video blog for ADDitude Magazine suggests that some children with Attention Deficit Hyperactivity Disorder (ADD/ADHD) improve because they learn to better manage their symptoms and their brains continue to develop and “tighten up” into their early 20’s. However, the majority of those with anxiety disorders report that severity can increase with age, although medication and cognitive behavioral therapy can help.

And what’s so magical about age seven or eight, the age by which these children are “growing out of” autism? Age seven is the beginning of a brain development phase termed The Period of Concrete Operations, a milestone of sorts, which lasts until around age twelve, where logic, organization, and problem-solving expand and egocentricity declines. Could more children be helped if diagnosed earlier? It’s too soon to tell but most studies suggest that the earlier the intervention, the greater potential for results. Fortunately, the average age of autism diagnosis has gradually come down to age four, but also means that many children are still diagnosed much later.

To help our eight-year-old twin boys, we sought the advice of physicians, naturopathic doctors, occupational therapists, ophthalmologists, and speech and language pathologists, while reading every relevant library book and web site under the sun, investing a small fortune, and spending the equivalent of a part-time job focused on their improvement. Many of my blog posts here have focused on the therapies we’ve tried. My husband and I do have more than a high school education and although we wouldn’t consider ourselves of “higher socio-economic class” we are frugal, resourceful, and willing to learn and faithfully execute the therapies we can do at home, avoiding expensive appointments when possible.

We definitely believe that our boy’s significant improvement over the past four years is due to the incredible, early support, education, and advice we’ve received from teachers, professionals, and fellow struggling parents, and for that, we are eternally indebted.

Although focusing on the 3 to 33 percent that are bloomers may leave some parents whose children are over age eight, suffering from multiple diagnoses, or lacking access to resources feeling hopeless, it’s my firm belief that clearly understanding what enables bloomers to thrive could eventually increase the number of children abandoning a diagnosis in the near future.

Animation courtesy of Gifbin.

Mar 22

Boo Hoo. Wah Wah. Pity Party for Adrienne…

Clearly I am feeling angry, or bitter, or depressed or something. Just got a survey about local “services” to people with kids with disabilities and totally LAID INTO them because guess what? Because my son’s disabilities are not physical, and because we are an average income family, we get no help for his developmental or intellectual disabilities. Because we pay for insurance, we qualify for no mental health assistance from our local mental health agency. If we made half our income my son’s therapies, plus several more, would be covered, plus we’d qualify for mental health benefits including respite, plus we’d get a check every month to help us take care of him. We’d also have a caseworker. Meanwhile – to pay for our insurance and my son’s special needs school is essentially half our income…and yes, maybe if we’d stayed with the school system to fight for services they’d have ended up paying for my son’s school, but at what price? Years of his life?

Clearly we’re in the no-man’s land of caring for our special needs child.
I really don’t know what the answer to this is. I certainly don’t begrudge people living in poverty the health assistance they receive, and I don’t want people whose children have more recognized challenges to NOT get services – but at the same time I feel very strongly that the situation is not fair.

So what’s the answer? What do you all think should happen? Do I have any recourse? Should I get a divorce so my income looks terrible? Should I get a job and throw our world into chaos? Should I put J back in public school to save money and force them to give him services and pretty much ruin all the hard work I put into him when we homeschooled and all the work his great little special needs school is doing now?

Or should I just suck it up? Hope and pray and trust that things will get better? Be thankful that we can pay our bills (I truly am). Be thankful for what we have?

Clearly, I should do those things. But maybe there’s something else I can do as well…

 

Dec 13

It’s about the money, honey. Balancing your child’s special needs, therapies, possible solutions and the whole family’s budget. How do you do it?

When we got our son’s FASD diagnosis early this fall, we received a list of suggested therapies and treatments from the clinic. I’m summarizing, but basically they were as follows: neurofeedback, behavioral therapy, an alternative school solution, occupational therapy, speech therapy to work on receptive language, and whole-family intensive in-home therapy.

The only things on this list covered by our insurance (which is a high-deductible plan that we pay privately for, as we are self-employed) are 20 sessions of OT or Speech, and 20 sessions ofpsychotherapy. The clinics that offer the types of behavioral therapy the clinic recommended are not in-network on our plan, and intensive in-home is not covered at all. Our local mental health/dd agency cannot help us at all since we already have health insurance and our income is too high to qualify for aid. We applied for a waiver based on our son’s developmental delays but all funding is frozen and it’s likely that even when it’s unfrozen we will not qualify when our case is reviewed…so we’ll have to appeal. Which means a lawyer.  Which means $. Which basically means my son *might* qualify when he’s too old to be a minor. This will help him as a DD adult, but will not help our family right now.

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